Artisanal
cheese is locally sourced and produced on a small scale, rather than
mass-produced. Artisanal care is individually sourced, selected, and developed,
rather than institutionally hired, supervised and monitored.
Post-stroke, my husband Jerry’s (J.) time in rehab was
almost over. I knew nursing care was only a part-time solution, an exhausting,
expensive compromise while I moved into our newly purchased accessible home. I
had to get away from the 24/7 television noise and other distractions in the
nursing home. My new home would be a sanctuary. To protect my peace of mind
would not be easy, but the core elements of my vision were taking shape:
I would keep working part-time.
I would not become a martyr to my
husband’s care.
I did not want strangers in my
home.
What would I do? I began informal conversations with some of
the workers I had bonded with during J.’s short time in rehab:
Would they be interested in working
at our home?
Would they be interested in a
flexible schedule with a good hourly wage?
Within a few weeks, I had lined up a few people to work for
us 5-20 hours each per week. All of them were CNAs and had nursing experience.
They were experienced in providing the transfers and
personal care my husband needed. They could help me get his wheelchair in and out
of the car when taking J. to appointments. They had been trained in
person-centered care, so they were attentive to his likes and dislikes at mealtime
and when selecting videos to watch.
More importantly, they liked him. They enjoyed playing cards
with him or laughing with him about a funny video. When I came home from work
or chores, the caregivers were good company for me, helping me navigate our new
normal.
I had an accountant help me set up a payroll system for
Social Security and Medicare taxes, so I could deduct these employees’ wages.
This was a workable system. As a friend put it:
“It’s a good trade. You need help, and they need money.” By foregoing an
agency, I could pay the assistants more. As the months passed, the CNAs I had
recruited from rehab transitioned to new jobs, new states, new
responsibilities. I realized this fluidity would be a common feature of
employing those in their 20s—an age at which most of us are in need of
employment while in transition between life stages, while trying to figure out
what’s next. I knew I’d need to recruit new caregivers soon. Who would they be?
Synchronicity struck. I received an email from a former
student asking for a letter of recommendation. Also, he wondered if I knew of
any part-time jobs.
It took me a day or two to realize that D. would be our next
assistant. An English major, he was a good listener, attentive to detail, kind,
calm, and compassionate.
He was not a trained caregiver, but he was physically strong
and a good problem solver. I could provide whatever training he needed. After
all, hadn’t I learned on the job?
D. worked for us for nine months before he left for another
opportunity. Another former student recommended her friend P. P. worked for us
for over a year and recommended his friend K. to fill in the gaps when he was
unavailable. Before too long, K. found a job in her field, and P. cycled back
in to work a couple of months for us before going out of state for grad school;
fortunately, D. would be back in town to attend grad school the same week P.
would be moving away.
These caregiving relationships were mutually beneficial.
While at our home, caregivers had more ownership of their schedules: they could eat meals when they wanted, visit
the restroom when they needed, read, nap, or do homework. As long as they were
available to respond to J.’s needs in a timely fashion, caregivers could relax.
There were other mutual benefits. Yes, they needed money,
and we needed help, but J. and I also enjoyed their company. We exchanged
movie, book, and music recommendations. We took turns cooking and shared our
leftovers with one another. If I needed something from the grocery store, I’d
text a request to the caregiver due to work for us the next day. I enjoyed
hearing about their ups and downs with friends, partners, and family members;
they also seemed interested in my life. On the cusp of career changes,
caregivers seemed open to advice and recommendations from me, and I enjoyed
feeling helpful. J. and I both enjoyed having these young, curious,
intellectually engaged people in our home. We were happy to discover and
cultivate these artisanal caregivers.
What are the key characteristics of a successful artisanal
caregiver? They should be intelligent, curious, and flexible.
High in both IQ and EQ (emotional intelligence), these special
caregivers could see J. as a human being with needs other than personal care.
Though he can’t speak (much), his intellect is intact. Their understanding of
this fact drives their respect for him and their unwillingness to talk down to
him in the patronizing sort of tone that can be heard in some nursing homes,
with well-intentioned, but over-worked and over-tired workers. They can also
listen, pay attention to non-verbal cues, and apply complex (not always
well-articulated) instructions.
Successful caregivers are curious, therefore interested in
learning new things, including how best to care for J. They are also interested
in the world more generally, providing wide-ranging topics of conversation that
overlap with both of our interests.
Successful caregivers are flexible and able to respond
according to J.’s changing energy level and abilities. They are aware that his condition
will be stable, unstable, then . . . terminal. Their own transitional status
allows them to cope with the fact that this job may suddenly be over.
Though I miss our mostly carefree life before J.’s stroke, I
am aware that our current situation has brought some unexpected benefits. We
have made new friends, and, together, we have all learned more about how to
cope creatively with life’s challenges.
---Rosewalk
Submitted 7/29/18
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